SRF is a “Get-to…” not a “Have-to..” Do something & Go big. #S10e139
SRF is a “Get-to…” not a “Have-to..” Do something & Go big. #S10e139
Talking with John Get vs Have (https://www.youtube.com/watch?v=J5oBo9zcRUE)
SRF is the same:
– Raise Funds to Change the Future
– Volunteer, contribute to a larger effort
– Connect with other families
– Share our experience to make broader knowledge
– Learn from each other and scientists
Raise Funds
#Sprint4SYNGAP 2024 syngap.fund/sprint24 – https://givebutter.com/ALjJXJ
– Newsletter https://mailchi.mp/curesyngap1.org/sprint4syngap?e=8531ca92fd
– $197k, 521 donors
– See you Saturday, enjoy it.
– It’s a get to, people get to support our incredible efforts.
Volunteer
ACTION IS THE ANTIDOTE TO DESPAIR – Joan Baez
– State Reps – May 3rd!
– Advocates – Jackie Kancir and Jess Johnson are killing it.
– Many other roles
– DEI too.
Connect with other Families
– Jaxon Movie is up https://curesyngap1.org/resources/movies/
– Sprint events. Volunteer. Etc.
– Hope drove across the country
Fundraiser https://givebutter.com/zDUIfN
Reel https://www.facebook.com/reel/421525020629131
Interview https://curesyngap1.org/podcasts/syngap1-stories/ #28
Share our experience to make broader knowledge
– FB: www.facebook.com/groups/syngap/
– CHOP is at 99! [email protected]
– Cinci is still recruiting too. Info – https://drive.google.com/file/d/1jLAIe6FTNRGlhPZpouDlYJNPv-d6ICNW/view?usp=drive_link; Survey – https://redcap.research.cchmc.org/surveys/?s=4CYCNJ47RCL7HLN8
Learn from each other & scientists
– https://curesyngap1.org/podcasts/cafe-syngap1/
– Coming soon: Missense Server is Awesome, Frogs too.
– NAL: https://curesyngap1.org/blog/drug-repurpose-update-1-tanganil-acetyl-leucine-for-potential-management-of-syngap1-related-disorder-symptoms/
– Remember new families have resources too! https://syngap.fund/Resources
I’m learning too! Just accepted to #LeadersLink of #FasterCures!
– Presshttps://milkeninstitute.org/article/leaderslink-cohort-2024-2025-fastercures
– X https://x.com/JMGraglia/status/1782778094589460812
– LinkedIn https://www.linkedin.com/posts/graglia_please-join-us-in-welcoming-the-newest-leaderslink-activity-7188548477889449987-DmAX
SOCIAL MATTERS
– 979 Subscribers on YouTube. https://www.youtube.com/@CureSYNGAP1
– 3,529 Subscribers on LinkedIn. https://www.linkedin.com/company/curesyngap1/
– 9,846 Followers on Twitter https://twitter.com/cureSYNGAP1
Podcasts, give all of these a five star review!
SRF Channel – https://podcasts.apple.com/us/channel/syngap1-podcasts-by-srf/id6464522917
Episode 139 of #Syngap10 – April 23, 2024
#epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat #F78A1 #CureSYNGAP1
